Local second grader raising awareness about celiac disease on ABC World News Tonight

Friday, May 28, 2021
Local second grader raising awareness about celiac disease
Not only has William Penn Charter School second grader Jax Bari been recognized by Philadelphia City Council for his work to educate others about celiac disease, his message has be

PENN VALLEY, Pennsylvania (WPVI) -- Eight-year-old Jax Bari, a second grader at William Penn Charter School, read the letter he wrote raising awareness about celiac disease that made him a national sensation.

It was addressed to ABC World News Tonight anchor David Muir, who he enjoys watching with his father. Muir made Jax's dream come true with a prime spot on primetime television.

"I was like wow I never thought I'd get here, and right now I'm watching me do it," said Jax.

The elementary student from Penn Valley shared the challenges kids like him face living with celiac disease. Celiac is an autoimmune disorder triggered by eating gluten, a protein found in wheat, barley and rye.

According to the National Institutes of Health (NIH), two million Americans have celiac disease, and some estimate close to three million people.

Jax's mother, Leslie Bari, is a big advocate on social media through her Instagram account: Glutenfreefinds_pa.

"Right now the NIH spends about $3 million a year on celiac research and of all the gastrointestinal diseases, it's the lowest," Leslie said.

The Bari Family's mission is to increase funding for research to eventually find a cure so that children with celiac disease can live a normal life.

The family also would like gluten to be labeled as a top food allergen, which would be clear and marked on all food packaging. It's already the case in Europe and Canada.

While May is Celiac Disease Awareness Month, Jax wants everyone to know it's something many live with and face everyday.

"I want people to know it's not an oh whatever thing, I want people to know this is actually serious," he said.